Doctor Diaries: January Follow Ups

OK,  It has been one hell of a week.  But it's almost over.  And then we are starting all over again, but I will gladly take a few days of no doctors.  I need to breath.  And plan.  And process everything this week has thrown at me.  I also need to stay off the Googles until I have an actual diagnosis or at least some more answers.

I usually kick the year off with a bang.  I try to get as many of my follow ups over with for the first half of the year.  Most are 4-6 months apart so it works. Lab work is more often.  Usually monthly if everything is good.  Sometimes its weekly or every couple of days when it is really off.  This week it was labs for 2 doctors and 2 doctor visits.  And it went a little something like this.

Read More

Liver Clinic Follow Up

I had my follow up at the Liver Clinic on yesterday and it looks like we are ending this year on a high note!  The doctor was happy with all my recent lab work and scans. We talked a little about everything, I got my flu shot and we were on our way!  But I thought I would share a quick little run down for those who wonder what these appointments are like.

I got checked in and they gave me my hospital bracelet. The hardest part of my appointment is always the waiting to get into a room.  We are supposed to arrive 30 minutes early but it usually takes a good 45 minutes before you are called back.  And there were quite a few people there this morning so I knew it would be a little wait.  As long as I have been doing this, I still get a little antsy while I wait.

Read More

H.E made me do it

The plan was to go back to sleep after the boys left for school, but the house next door is getting a new roof and we are on day two of nail gun heaven.  Lucky me.  I tried to read but that's not working.  I had an omelet. That just made me nauseous.   Everyone is always telling me that the like how I can always put a positive spin on things or how I always see the silver lining.  Some days are more graceful than others.  And some days I lose my shit.  It happens.  Today might just be that day.

I think technically that day was Monday night, when I pretty much broke down mid Kitchen clean up.  I was trying to hard to hold it together.  I'm usually a wait until everyone is sleeping to cry kinda gal.  David figured it out and ended up hugging me until I was done.  Then he helped me finish cleaning up and listened to a few more colorful outbursts, wiped away a few more tears and sent my butt to bed.  I didn't fall asleep until after 2am.  I got a whole 3 hours of sleep that night.

For a few minutes I thought depression was creeping back into me.  Its always been around.  Worse at times, but throughout the most part of my sickness, I have been able to push through that darkness.  I have been able to focus on the good and the light.  Anxiety yes, depression, not so much.  But this felt like something more.  Something stronger.  And then it hit me.

Read More

Dear Mr. Bad Apple

Dear Mr. Bad Apple

When I walked by you, I didn't notice you.  I didn't see you.  I didn't hear you.  I had just come off of a ride with my boys and my heart was so happy.  But my son saw you.  He heard you too.  And the words you spit out as we walked past, grabbed his happiness and stomped on it.

Yes you,  Sir.  Sitting there with your wife.  Talking about my body!

Read More

Liver Clinic Appointment

I had my Transplant Clinic follow up on Monday.

It was a little different than usual.  I was alone, had had no routine scans or test done and I had never met this Doctor before.  No worries.  OK, I was a little worried.

Read More

Just smile and nod...

Today, I really struggled to make sence of my words. I slurred, words came out all jumbled and I felt like my hearing was delayed 3 seconds. I had to think about everything someone said to me. 

At dinner the boys were trying to tell me a joke but at the time it just felt like they were laughing at me because it took me a minute to understand why they were laughing. One minute I wanted to cry and the next minute I was laughing so hard that I was crying.

I get so frustrated on days like this. Days where I look back at my snapchats, insta stories and other posts so that I know what went down that day. But now that everyone is sleeping, and Ive had time to look back on the day I can find reasons to be thankful for them too.  

One of the boys would say something and when I couldnt answer, they would just drop it and move on. When we were driving home, I caught David sneaking looks at me over and over. But mostly he just smiled at me. There is nothing more embarassing than feeling like a fool in front of the people I love the most. Expecially when I am usually so good at holding it all together. But I cant believe I would think they were being intentionally hurtful to me when they have been nothing but patient and understanding. They love me on the good days and the bad.

I paniced a few times when I turned around in the stores and they werent there. Alex had a death grip on me pretty much the whole time but when we stopped at Buckees and both boys went to the Mens room with David, I had to take a minute to gather my bearings and remind myself of where I was. I am almost never alone. It makes me feel like a lost child. How embarassing.

I have not been taking my medication as I should be. The doctors want me to exercise so 3 days a week we hit the gym. The other 2 days we are back there for swim lessons.  And between doctors appointments and errands, I just keep putting it off. One dose equals about 4 hours of the stomach flu. And Im supposed to take it 3 times a day. Yeah, I have no time for that. Thats what I keep telling myself anyways. I was taking it twice before school got out. Then once a day.  But Im so tired and it is so hard to take something that only makes me feel even worse.

The double edged sword of life with chronic illness. 

Because I havent take it in a few days, my brain is sluggish and now I am mentally exhausted too. I had to stop reading my book because I cant retain what Ive read and have to keep starting

I hate feeling like this. But there is a very good chance that tomorrow, I will not even remember how Im feeling right now and so Im writing it out. Not for any other reason than that days like this are the reality of my life with chronic illness. And because there was a time I had all these exact feelings but had no idea why. It was scary having peices of your day gone, forgetting things, not being a not being able to make out full and complete senteces and having no clue whats going on.

I finished my cup of tea and I guess its time to call it a night. I am going to sleep off all these emotions. Mornings are lifes clean slates. Even more so when you can't remember what you did the day before. Joking! I might lose my memories but never  my sarcasm. Ok, no more jokes. 

Hopefully this all makes sence in the morning. I apologize if it doesnt and you've actually made it this far.  Heres to an amazing Sunday to end the weekend.

Read More

H.E. is back! Did he ever really leave?

Its been a really frustrating few weeks.  For a while there, I was sure I saw the light at the end of the tunnel. Getting closer and closer.  I felt like I had a pretty good grasp on life and was feeling stronger.  Life with liver disease is so unpredictable.  And that light at the end of the tunnel, was just a train coming to run me down. The H.E. Express!  Hepatic Encephalopathy is the devil.

I have been trying to write this post for weeks.  But I always get angry and end up sitting here in tears wondering why me.  And I don't want to do that.  That's not me.  The real me smiles and says "better me than you." I can't even begin to wish this on anyone, especially someone I know.  I would gladly take this if it means my family is healthier than I am.

So what exactly is going on?  What is life like these days?  Well, its been cloudy.  Slow.  A bit repetitive. And very lonely. If you know me, you know my answer is always " Im fine."  I used to feel like I could share the truth.

Then I let a few comments and reactions, make me feel guilty for sharing so willingly.  I felt like the people I wanted to care, didn't care to hear it anymore.  And people who I didn't even know, wanted to know why I was even sharing such dark things.

The shock on my diagnosis set in and everyone else lives wen't back to their normal.  Except mine.  I didn't get better.  I was still scared.  I was still sick. But I still had a life to live.  Kids to love and take care of.  A marriage that was cracking under the pressure. A family to hold together when I was barely holding myself together.

After a few years of this I have learned triggers for HE episodes.  I hardly ever eat red meat.  Still cook it and drool over it, but only allow myself a few bites.  Big meals and animal protein usually set me off real quick. Lately I have been living off of (plant) protein shakes.  I always have water with me.  Taking my medication regularly has been a struggle but I think we got it all worked out.  One makes me sick and the other cost almost as much as my mortgage. I still try to play it off.  David and the boys however have learned to read me.  And they are quick to tell me I am not being myself.

Remember my first HE scare?  I forgot where I was and who I was with.  It was the single most terrifying moment in my life.  For a few minutes, I didn't even recognize my own husband.  Life with H.E. isn't easy. On a good day, I never even know its there.  Some days, the boys will tell me that Im "smushing" my words together. Sometimes I slur.  I don't think I have even done anything inappropriate.  Sleep problems...check! My hands don't flap, but they are shaky. It takes a lot of lists and alarms, but I am still able to keep up with most things. Its scary though, how bad I can get at times.

Things have changed a bit now that the boys are home for the summer.  I don't like turning the stove on because I am scared I will forget to turn it off.  I wake up out of a dead sleep to check on the boys, the dogs, the doors. That is if I am sleeping at all.  My sleep the past two weeks has been 3 or 4 hours a night if I am lucky.  I got lost in my own house.  I don't trust myself to take them to the pool alone anymore.

I have been carefully holding myself together for the last few weeks with the boys home.  I don't want them to see me stare at a wall and cry because I can't for the life of me remember what I was doing.  Its bad enough they feel like they have to check on me constantly. Disheartening isn't the right word.  It kills me to feel like Im letting them down.

I have slowly been coming out of what feels like a thick fog.  At times, I feel like a child.  Talking myself though everything I do so that I don't forget what comes next. The other, I reached in a frying pan with my hands, more than once.  Today, I feel more like myself.  I was up before my alarm and took my meds on time.  A few months without them had me drowning.

I put my meds on auto refill.  I accept the fact that I need them.  Just knowing how they are going to make me feel makes it a little harder to swallow, but feeling like I have the flu is 100 times better than what happens when I don't take them.  I know that.  I will be better at taking them.  Making them a priority.  Sometimes I just want to say forget it all and just be normal.  But the thought of more blood clots and a coma get me right back on the straight and narrow.

Life goes on.  This morning the boys both told me they were happy I was up and walking around.  We cleaned up together and spent some time out back before they did their chores.  I did take my medicine today and while my body is hurting, its the first day in a long time that my head feels clear.  And its only taken me 2 weeks to get post this written.

I feel like I should have started with a warning that there is a chance this will not make any sense at all. But Im scared that If I scroll up I will get distracted and I won't push publish.  It is what it is.

Read More

Rare Disease Day 2016

Today is always a day that hits me hard. It's eye opening and a punch in the gut. Inspiring and disheartening all in one. It's a day that finds me thankful and sad. 

Today is Rare Disease Day.

When I was diagnosed with Budd Chiari Syndrome, my doctor told me it was a rare liver disease. I had no idea what he was actually telling me. What he should have said was something like,

You will lie awake at night and wonder what life is like with this disease. And for years you will not know anyone else with it. 

Some days you will hold you babies and plead with God to let you have a lifetime with them, knowing that time is something you might not have.

One night you will finally find a blog, by a person who has Budd Chiari Like you, but you will notice there has been no posts for years and you will assume the worse.

Doctors will tell you what it's supposed to feel like, but you will also be the only patient they have ever treated with this disease.

You will feel alone, even when your friends and family surround you in support. Because not one of them knows what it's like. 

Some days you will be so full of hope that you feel like you could take on the world, and the next day, you will feel defeated and drained of the hope you had the day before.

And eventually when life goes on, the devastation of "being sick" wears off on them and slowly but surely you really will be alone. 

Yeah, that's what he should have said.

But he would also have to tell me that someday I would decide to share my life with Budd Chiari Syndrome. That slowly but surely people would find my blog and other social media and they too would have this rare disease. And that over the years I would befriend some amazing people who knew exactly what I was talking about.

They understand that stabbing pain. They understand the frustrations of taking a medication that only made you feel worse. The monthly and sometimes weekly blood draws. We are a rare bunch. In all different stages of the disease. Some were instantly sick. Some had transplants immediately and others only shunts. One had a transplant only for the clots to form again! Many of us are mothers and wives. Some are more active than others. We are all different yet the same. Because we all belong to a rare club. And suddenly I wasn't alone anymore.

So how rare is it? Honestly, as much as I have looked I cant find a solid answer. I do know that as far as patients who are listed for transplant due to Budd Chiari is 111 plus me. In the whole US. I'm sure there are at least that many people who like me have no idea they even have it. And in our FB group there are a whopping 320 of us from all over the world.

I should add that my Budd Chiari Syndrome was caused by a blood disorder that only 0.01% of Americans have. I am homozygous for the Prothrombin G20210A mutant form of Factor 2. Sounds fancy right?

If you or a loved one have been diagnosed with a rare disease a be sure to check out Global Genes and NORD. Ask your doctors, if there are any support groups or other resources they recommend. Remember that there are going to be good days and bad.  There is a whole community of other rare diseases here to listen and share stories with.  Do that.  Share your story.  Because you never know if there is someone else just like you, worried that there is no one else out there like them.  You are rare, yes, but never alone!

Read More

Liver Clinic

I had my follow up with the liver clinic on Monday and the week went downhill from there. Its just been another one of those weeks that I really had to struggle to get through.  It was hard to find the good.  It was hard to find a smile.  It was just hard.

Before I left for my brothers homecoming the first week of April, I got a cold.  Thankfully while I was in NC I was fine until that last day and I could feel that scratch in my throat.  A few days after getting home it hit me again.  Hard.  And now here we are the first of May and the only thing that has gone away is the fever.  I know a cough can stay around for a while, but this isn't just a lingering cough.  Its a clearing out the lungs, hacking, wet cough.  I have been praying I wouldn't have to go to the Dr, but tomorrow we are headed to the clinic.  Who knows, maybe they will just send me home and tell me to suck it up.  Maybe I actually have something. Sometimes, it just feels like I am always sick and I don't know the difference anymore.  According to the Dr at the Transplant Clinic, I just need to stop doing nothing.  I'm not bitter about that at all...

As far as my appointment went, it was pretty deflating.  I have gained 5 lbs in the last 7 months. And I knew she was gonna be unhappy about that.  According to my doctor I am to young to be sitting around doing nothing and now that the boys are both in school, I have plenty of time to do things.  Yeah like clean, cook, tend to the dogs and parent.  Some days even taking a shower is exhausting, but I'm pretty sure she has no idea what I'm talking about.  She also suggested I see the Psychiatrist about my anxiety. Been there, not sure I want to go back. I think I will just start running again. She also to me to see my primary doc about the cold.  But all in all, my liver is still hanging on. The polyps are not growing. And even with the clots and blockages, I am getting a good enough blood flow to my heart. I haven't gotten my lab results back yet but they will probably be the same as always. And I have more labs and another MRI scheduled for June. The hardest part of the whole appointment was hearing that I could stay in this condition for years or one day I could just go into liver failure. That is the hardest part about this, the waiting. Waiting for yellow eyes, ascites, more pain, heart or kidney failure.  I will never know when its going to hit, I just have to find a way to put that fear to the side and live my life. I know this, but sometimes I lose sight of it.

Despite it all, at the end of the day, I am still able to look at the life I have and be thankful.  Even with all the frustration and sadness, there is so much to smile and laugh about.  I have some of the most amazing friends and family.  Just today my friend brought me a get well jar over.  The peppermint tea was just what I needed. Man did it hit the spot.  Seriously, how thoughtful is this. Tea, Ricola, Garlic Pills and 3 dollars for a Hope for Kim band.

 

I guess its time to regroup.  Time to focus on all that I have.  Time to push myself past the limits that have been holding me back. But first, I have to tackle this cold or what ever the heck it is. Pray that tomorrow brings me answers!  

Read More

This is my normal. This is my life.

I always try to stay positive.  Most days I don't realize how limited I am.  This is my life,  I'm used to it.  But after writing down things like "I don't ever leave the house alone." and "I don't usually cook unless someone else is home to make sure I turn the stove  off or to help in case I cut myself and can't atop the bleeding." for a disability review has my stomach in knots.  Having to take a good hard look at your life and realizing just how different my life is was like a kick in the gut. David tried to comfort me and remind me that none of this is my fault.  But I think it's something you just don't get until you it happens to you.  And I don't wish this feeling on anyone!

It takes every ounce of energy to focus on what I'm doing and not get distracted.  And without my medication it's almost impossible.  Medication that clears my brain but destroys my body.  Medication that cost more than I spend on groceries.

Last night was all wrong.  I put the boys to bed with any last bit of clarity I had.  I told them I was going to run the vacuum real quick.  I plugged it in the dining room and grabbed the dishes off the table and took them to the sink. I remembered  Walter needed his pain meds so I got mine out too.  Rolled his in cheese and he gobbled them up. Went to the bathroom and remembered I had towels in the dryer so I sat on the couch and watched tv while I folded them. I dozed off.  Woke up.  Put the towels away.  Laid in bed and then realized  I forgot to take my medication.  So I got up to take them.  turned off the lights.  Text David, checked fb and instagram went to bed. Only to jump up a second later to unplug the vacuum that I never ran. I laid down and read for a minute before falling asleep for the night.  Didn't hear David come home or get in bed.  Out like a light!  The three hours I spent chasing my tail had worn me out. Some weeks I can't sleep and others I can't stay awake.

Alex doesn't know the old me. Anthony doesn't remember much. We used to spend afternoons at the park and run around for hours.  I was patient and more present. And I never second guessed myself being home alone with him all day. I baked and cooked without a worry.  I am beyond blessed with boys who can be independent  when they need to be and are learning to help out more. I know it's a lot to ask of them. And I hate that I put that burden on them. But I think at the same time it teaches them responsibility and respect.  They are learning how to pick up after themselves and clean properly.  And even how to cook. All life lessons that seem lost on so many young adults these days.  They are learning that life isn't handed to you on a silver platter. And that if you want something  you really have to work for it. 

Even writing has become hard. I keep getting off track and starting new paragraphs. My spelling gets so mixed up and I don't even know what I was trying to say.  Anthony just came over to let me know that he warmed himself up dinner and that he put away the water I forgot on the counter last night. And that he will feed the dogs.  I'm sitting here hoping to finish this so I can share it before I get side tracked and it stays here like the other half written  posts on my phone. ** I didn't post right away. But I did get two loads of laundry and my bedroom cleaned before coming back now** I've been trying to finish an instagram post for the last 9 hrs too.  Done.  Finally!

Going out during the week with out David or my mother inlaw is rare.  Last week a friend picked me up and we went shopping.  I felt normal.  Thursday we are going to get our hair cut and to lunch on friday.  Moms do these things. It blows me away that some moms can just decide to go shopping and go.  I can't drive.  So I can't go anywhere with out planning ahead and asking someone to drive me.  Having friends who are willing to drag me out and along with them makes me feel so regular.  Its like being able to pretend that everything is ok.  Some people look at the rich and the famous and wish it were them.  I look at the overwhelmed multi tasking soccer moms in movies and that's who I want to be.  I want to drive though a Starbucks on my way to the boys soccer practice. I want to go to the gym.  Or have spur of the moment lunches with my girls.  To be able to go to the store when I forgot an ingredient  for dinner instead of having to ask my neighbors...again.  I want to be able to say I'm going to do something with out myself or someone else doubting me. 

But this is my normal.  This is my life.  The days I spend feeling sorry for myself are thankfully few and far between.  I just hope that someday I will get to do these things.  This is just the present and there is no telling what the future holds for me.  I just hope it includes a driver licence, Starbucks and a trip alone to the library!

Read More

Update of Sorts

Not my typical Wednesday post but I figured I have a few minutes and since my phone is being a pain and not letting me upload my pictures, Id get this out of the way.  

Yesterday was my liver clinic appointment.  Although, I'm not sure I would call it that much.  It was more like a meet and greet.  The Doctor shook my hand and that is the only contact we had.  No abdominal exam. No checking my breathing even.  The nurse checked my stats, so I do know that my blood pressure was a good 106/64.  And now that my appetite is back, I've gained back the 6 lbs that I lost last month.  Not a big deal.  I was so caught off guard and felt so rushed that I didn't even mention the shortness of breath to him. Or the bloating.  Which could have been brought up when he did my exam, except that never happened. After a 2 hour wait for a 6 minute appointment, I was just to out of it to even think straight.  I feel asleep somewhere in there.  Something that happens a lot these days.  Another thing I should have brought up.  I did bring up my mood swings to which he laughed at.  Never got an answer there either.  

But there was good news.  My last scans show no cancer.  My liver and spleen are still greatly enlarged but that's not news.  My labs were good.  My liver is diseased, and while it is not functioning as well as it should be he said it is not failing just yet.  And until it does, I will just keep doing what I'm doing.  Waiting. I've been doing this for the last six years.  But hearing that you are not sick enough yet to be helped burns like a slap in the face.  EVERY. TIME.  

So here I am.  Writing this out.  Waiting for my meds to kick in and knock any energy I have left right out of me.  Praying that I am able to pull it together and pick the boys up from school.  Keeping a mental reminder that I need to get the house cleaned and dinner started.  All while feeling like I am stuck in slow motion and I'm not going to be able to get any of it done.  I spent the morning reading and trying to refocus on the things I need to pay more attention to.  The boys, David, the dogs and the house.  These are the things that matter now. They are the ones I am doing this for. 

I still have to call and schedule another mammogram as there are even more lumps that the doctor is concerned about.  The last one was nothing so I am praying these are the same.  I will call the liver clinic to see what the results of my blood work were and schedule the ultrasound they ordered.  And on Friday I have an appointment with the hematologist.  I swear I can't catch a break.  But I can't sit here and let it eat at me.  I usually do pretty good at keeping on the bright side but every now and then I have to pull my self out of the dark and remind myself that I could be worse.  It is what it is and it really isn't that bad.  

I'm beyond thankful for all the support, words and prayers that everyone sends me.  I was glad to have David there with me even if he is still laughing about me talking in my sleep.  He thinks hes funny, that man! But I love him for keeping me smiling when all I wanted to do was pitch a fit like a 4 year old.  Despite all the craziness, I am beyond blessed..

I am still debating on switching transplant clinics.  But I am loyal to a fault.  I have been seen here for the last 6 almost 7 years.  And have only had problems the last 2 years or so.  There is only one doctor I care to see who actually gives me the time of day and his full attention.  Do I stay or do I go?  Can I?  I have no idea what to do. Time will tell.  No decisions till after the new year.

Read More

Define Disability...

If you have been following the blog for a while you may have heard me talk about receiving Disability Benefits. I don't talk much about it because I have gotten a bit of backlash for it. I didn't apply so I wouldn't have to work. I did it because there is no way I could go back to work and keep myself as "stable" as I am right now. And surviving on Davids income alone seems impossible. I had been planning on going back to work just before I was diagnosed.

Today I got a letter in the mail stating that my case was under review. I stared at the pages on the packet I have to fill out. I remembered how small I felt in that courtroom asking for help. How scared and embarrassed I was. Even though I had a whole team of doctors behind me, supporting me. Even with David beside me reminding me to breath and to stop laughing out of nervousness. What I really wanted to do was curl up in a ball and die. It honestly seemed like it would be easier. Being questioned about things I was just learning and not having enough confidence to fight for myself. It was awful. I was denied. And after my lawyer pushed back, we won. I feel all those emotions coming back to me as I write this. What if I am denied again.

I would love to be able to work a full time job. But I'd have to stop taking my medication and my encephalopathy would only worsen. Yesterday I made banana bread, turned the oven off but never took the bread out of the oven. I've locked my self out of the house and left the stove on. I have cut myself, fallen, gotten lost and forgot who I was. I've become hesitant to leave the house. I dread it. But I try to make the most of my good days. I can volunteer with the Rescue every chance I can. David drives me and is ready to pick me up as soon as I call him. I spend soccer practice in the car because I worry that I look as bad as I feel. I put on a smile as part of my outfit for the day even though on the inside I am an anxious wreck. I deny help because I hate that I need it. Do you know how hard it is to be a good parent when you are so unsure of yourself? When your mood can go from hot to cold before you can even catch your breath. Have you ever been so mentally exhausted because when you kids are home you are constantly keeping track in your head of where they are and telling yourself they are fine. All while trying to double check everything you are doing so you don't screw something up

When I get home after school my thoughts go a little something like this.

Ok it's 3:15. Is the garage door closed? Doors locked? How many kids do I have? One. Two. Three. Where is Grandma? Backpacks!! Folders. Oh wait, whats for snack today? Did I make something? OH crap I hope I turned the oven off. Where is everyone? Backpacks! Folders. Folders. Folders. OK everyone has their folders. What was for snack again? Wait! Did I eat today? I should eat something. Did I put the clothes in the dryers? Dinner, whats for dinner? Oh hey look someone commented on my FB picture. Wait, when did I share that picture? Oh I forgot to text so and so back. Oops David text me 2 hours ago and I never hit send. Sorry Baby! What was I doing? Where are the dogs? Oh right behind me. Where are the kids? Guys?!?! Anthony is in his room reading. Alex and Eva are finishing homework. OK. Crap!!! Guys! Come get your snacks! Sorry. Dinner. I need to start dinner. Practice in 3 hours. Wait where is the soccer bag? ANTHONY!! I should text Grandma and see if she can watch Alex. No energy to play soccer with him at practice. Dinner, right. Wait GUYS! Where are you? Homework now! OK. Dinner. First water. Feeling a little queasy. I never ate did I? Breath. What time is it. 3:30. Focus Kim.

Sometimes I catch myself just pacing back and forth with my hands on my hips trying to figure out what I am supposed to be doing. By the time I start dinner I am done. And that's just in my head. If only I could give you a run down of my medication and the side effects. Maybe someday. But its something that has to be done and I am determined to do it until I physically can't anymore. That sounds a little stubborn, but I know what my future holds. I know I will miss dinners because I am in the hospital. I know that there will be weeks where I can't find the strength to make dinner. I try to remind myself that cuddling them a little longer, read another chapter or at least sit with them while they fall asleep because there will be days that I will miss it all. Even the meltdowns and arguments, I know I will miss them too.

But for right now, I am just going to fill out theses form, have faith in the doctors and my own decisions.

Read More

Got Hope?

I remember sitting in the office with the Transplant Team going over the costs of life on the transplant list. The numbers kept adding up and I lost track around $50,000.  My head was spinning at the cost of medications and procedures.  And by the time we were done, I just wanted to run away and hide.

I was going to be the ruin of my family.  I had just had a baby.  Then a liver biopsy.  I had a tumor removed from my neck and I knew the bills were piling up.  I could see the stress my husband was under being the sole provider and I knew he was struggling.  And worse, now I knew it was only going to get worse.  How did this happen to me.  I was more mad at the financial burden my illness put on my family than I was that I was sick.  I was told I could not work and that was just the last straw.

Most people who know me, know I hate to ask for help.  I'm the helper.  But how could I get though this without help?  There was just no way it was going to happen.  I was going to have to ask.  I put my pride aside and did just that.

One of my transplant buddies off of Twitter suggested I look up Help Hope Live. I signed up and started brainstorming with friends and family on fundraiser ideas.  You can find my page HERE!  My dear friend Stacy, whom you might know from her amazing blog Kids Stuff World and my sister stepped up to help me and there will never be enough that I can ever do to thank them!

Melisa had the suggestion of awareness bracelets and so she designed and ordered them.  We sent out a few emails and shared on Facebook.  And guess what, the orders came in faster than we could keep up with. We stuffed envelopes, printed cards and wrote thank you notes.  It was so much more than I expected. And it didn't stop there.  Pictures started popping up on Facebook.  It moved me to tears and even to this day when I need a pick me up, I go though them I remind myself of the all the people who are cheering me on. So much love and thanks to you all!  I could not have come this far with out your kind words and encouragement.  

From Boston to the Marshall Islands and so many places in between.  Each of these pictures means so much to me.  And this is only a few of them. Thank you so much guys for coming along on this journey with me!  I have hope, because I have you!

Read More

Happiness is ______ {2014-W11} #happinessis

OK I missed last week, so I'm doubling up the happiness this week.  Sorry.  Not Sorry :)  Life has been a roller coaster lately so it feels good to focus on the happy stuff.  Be sure to stop by Crazy Adventures in Parenting and see what happiness others are sharing this week!  

Happiness is catching him rocking out to the beat of his own drum. 

Happiness is nap time in a box.  In your underwear.  With monster feet on.  Yall don't do this too?

Happiness is a super serious game of go fish.  

Happiness is some QT time my little sister before she moved.  

Happiness is a new toy in their room at Grandmas house.  Spoiled boys!

Happiness is riding a dolphin.  Even if its on the new Carousel at the zoo.  

Happiness is finding this. Why is it happy?  Because I would gladly push myself into exhaustion for the fun and memories we had this week.  Also the whole hands and feet in warm water with a cold towel on your neck thing really did work!  

Happiness is the smell of spring and buzzing bees that leave me alone :)

Happiness is getting back to my natural hair color. Feel so much better now!

Happiness is silly boys at the park.

Happiness is taking the dogs out for a waddle walk.  I got Poncho to run with me and turns out he is a great running partner, but only off leash.  Man can he run! Chico sat out of the running part.

Happiness is nap time.  Next month we are registering for Kindergarten and soon someone else will get to see how peaceful he sleeps.  And watch him laugh himself awake.

Here is to another week full of happiness.  Wishing you all nothing but love.

Read More

Friday 5: Questions about my liver disease

I've kinda gotten away from why I started this blog in the first place.  Why?  Because I let someone make me feel guilty for putting my story out there.  I didn't start this for pity.  I wanted to share my story and show that I was going to live with this liver disease.  And I was going to live a good life.  To share my struggles, my happiness and my hope.

Right now I am stable.  There isn't much going on for the liver transplant patient part of me.  So I have been sharing the rest of whats going on or sometimes nothing at all.  I miss writing out my feelings and not expecting to be judged or criticized.  For the longest time I felt guilty for over sharing but this is MY blog after all right?  So if right now my dogs are the center of my worries, or the boys, or whatever, I am going to share it here.  Because I can :)

So in the spirit of getting back to not feeling guitly about my liver disease, here are 5 common questions that I get when people do get over the shock that I am 31 years old, on the transplant list and its not alcohol related!

How long have you been on the list?

I was listed with UNOS on May 25th 2010.  So this year I will be coming up on my 4th year on the liver transplant list.  According to my clinic the average wait time for a liver 6-12 months.  Now before you get upset or feel bad for me, know that I am ok with this.  Most days anyways. I have had 4 healthy years with my boys.  I have watched them grow, start school and become little men of their own.  I am thankful for the time I have had with them so far.  When time comes for my transplant, I know I will be in pretty bad shape and will most likely miss out on a lot of things.  So I will take all the good days I can get.  Even if I have to wait another 4 years.

When will you get a transplant?

My usual reply to this is "when I am sick enough to need one".  The list is based on numbers.  Not the way you would think though.  It is based on our MELD scores.  The higher your MELD, the sicker you are.  My doctors are very up front with me and have told me that for me, I most likely won't move up until one of my other organs starts to "scream".  Read Shut down. If it is my kidneys or my heart, who knows but going by how my disease is progressing, it will most likely be one or the other.  The blood flow to my heart is restricted and often as the liver fails the kidneys try to pick up the slack and in turn over work themselves. Isn't it amazing the way our organs all work together.  Liver disease is also very unpredictable.  I was told I could wake up one day, yellow and jaundice and my MELD could jump way up.  I could get the flu and my body just shut down because it can't fight it.  Or I can be stable for the next 10 years.  So when will I get my transplant?  I have no idea.

How do I find out if I'm a match for you?

As much as I would love to get this over with and get on the road to a healthier life, I would struggle...a lot with a donor liver.  Well I say that now that I am stable.  I know if my life truly depended on it and it was my only choice I would accept it.  But for now, not only would I pass, it just isn't an option for my type of liver disease.  My doctors have said that a donor would be a last resort in my case.  But just because you can't help me, please still register to be an organ donor.  And consider saving a life of a stranger or someone else you know. There are so many men, women and children who could have a live donor.

How did you know you were sick?

David and I went in for my big ultrasound and as soon as the technician put the wand on my belly it was written all over her face.  She made up an excuse about forgetting papers and returned with the Doctor.  I remember thinking, You have GOT to be kidding me.  After 2 losses and a preemie, I knew immediately that there was something wrong.  I am so glad that the problem turned out to be mine and not Alexanders. And I mean that from the bottom of my hear.  I would gladly take on any illness or problems if it meant my boys could be happy and healthy.  The doctor explained that my liver was enlarged and that it was most likely nothing to worry about but she referred me to a GI doctor just to be sure.  Dr H called me after my appointment and scans and said "I am very impressed by your liver" And I smiled.  Until he told me that it was because he has never seen one so large.  Damn.  He diagnosed me with Budd Chiari Syndrome and explained it the best he could.  Most of it was just a blur.  Huge liver. Clotted veins.  Chronic liver disease. What the heck people.  All I wanted to know was if I was having a boy or girl and within the week I was scheduled for every scan and test in the book.  Life hasn't been the same since.

Have you ever felt like giving up?

Are you kidding?  I have gone to some pretty dark places while I have tried to wrap my head around this whole thing.  One minute I was a happy expecting mom and the next I was a confused and ill mom who not only was at risk of losing my baby but of dying myself.  Now if you have ever been pregnant you know the emotions that run crazy though you anyways.  Add on all the stress and worries and yeah, there were quite a few days I just wanted to disappear.  But then I would realize that if I gave up, I was giving up on my husband and my son.  Not to mention the life that was growing inside of me. My boys have been my anchor though this whole storm.  Whenever I feel like I just want to run away, I look at them and they wash away all my doubts and fears.  My husband, I can't imagine not having him by my side.  Even though the first few years were insanely hard on our marriage, we are stronger now than ever.  I will never give up and I know my guys wouldn't let me anyways.  There are still dark days, but there is always a light at the end of the tunnel.

Read More

Happiness is ______ {2014-W7} #happinessis

If I was being 100% honest, I would say that at first I thought I was going to struggle with this post.  I have been beyond stressed, overwhelmed, bitter and flat out uh happy.  Its been a rough couple of days and I was thinking I would skip this week because I couldn't thing of happy stuff.  Then I scrolled though my photos and this is what I found. Happiness. 

Sometimes I get so annoyed when I have to have labs drawn.  Monthly, sometimes weekly.  I have to bother someone to take me there and then wait.  I'm so over it.  Like four years ago.  But Happiness is when the doc calls and says my numbers are perfect.

Happiness is knowing that even though there are days I would rock the heck out of a wheelchair, I am well enough to walk. Even if its only for short distances.  My energy has been hard to find these days, but so far its been pretty manageable.  

Happiness is fresh air and the smell of soccer :)  And also seeing this little guy boot the ball like a champ!

Happiness is a beautiful start to a day that was less than.  I don't know how many times I tell myself "at least the day started out beautiful!" 

Happiness is hospital cafeteria food. So often I worry that I scar the boys with so many trips to the hospital.  But they love it there.  It makes me sad that its such a normal thing for them.  But I am glad they are understanding and that they don't mind going.  Especially if Grandmas taking them to get some food.  

Happiness is trying a new place.  Even if it was awful.  I will just stick to my sausage and bean tacos.  But we actually tried something different for a change!

Happiness is having boys that love food I ate growing up.  So many kids turn up their noses to things like Musubi (rice and spam wrapped in seaweed), smoked oysters and octopus.  Its not very often we make them, but when we do, there are smiles all around!

Happiness is the love these two have for each other.  Chico is 13 years old. Hes feisty, yappy, grumpy yet full of love.  He hasn't been feeling so great lately and Poncho knows just what he needs.  Some good old cuddling!

Sometimes I just have to remind myself that there is so much more to be happy about than for me to fuss about. Yes sometimes I want to thrown my hands up and quit. I scream and cry and feel sorry for myself.  But even on the worst days, there is something to smile about.  Something that makes me happy, even if just for a minute.  Stop by Crazy Adventures in Parenting and share in the happiness!  

Read More

2013 Highlights

Before we close the door on another year, I just wanted to take a minute to share a few things we did in 2013.

 Soccer!  It was amazing to see Anthony improve in just two seasons.  Watching him practice and then seeing his hard work paying off made me so proud.

 

There was a flow constant flow of Foster dogs this year

Haiku.  She started a love for huskies in Alexanders heart!

Bruce Wayne the Dane

Sweet baby Marie

My niece Jamisen turned one.

Jam Jam.  <3 her!

We had some awesome adventures this year.

Exploring at the park

Despicable Me 2.  Both boys actually watched the whole thing!

I have a crush on Ballapeno.  Clearly he likes me too :)

Road trip with the boys and dogs

Poncho met some cows

Hayrides at the Rio Cibolo Ranch

Anthony started making dinner once a week.  Lots of homemade pizzas and spaghetti this year.

And I realized that my baby isn't a baby anymore. In 2 weeks he will be 5!!

It was a great year.  My family is happy and healthy.  The boys are growing into little men.  With opinion and ideas of their own.  David was finally put on a better work schedule which meant he was home for dinner more than just a few weeks this year.  I made friends.  Last year I made a goal to be more social and not let my illness hold me back and so I did.  It might seem silly to some, but being pretty much house bound gets super lonely at times, so its a big deal to me.  I said I would not let my illness stop my boys from doing things they wanted to do and with the help from my family and friends, we did so much more this year.  Specifically Soccer.  That was pretty much the highlight of the year.  We are blessed.

As for me, health wise, I have been doing great.  Stable is what the doctors call it.  My liver function is still ok.  The nodules on my liver have not grown.  I have not had any major problems with my blood disorder.  I did have a scare, but and early mammogram showed us there was nothing to be worried about.  And I have been able to stay on top of my Encephalopathy so my head has been foggy but nothing too bad.  All this together means, less lab work and more time off in between doctor visits!  WIN!

Now we look ahead to all the new year has in store for us.  This is the year that Alex starts school.  That will be the big thing for us this year I think.  And soccer!   Here is to a year full of good health and lots of laughter.  To new friendships and more adventures.  I'm so ready for this!  Hello 2014!

Read More

Friday Five: 5 questions I get asked about my liver disease.

When people find out that I have a liver disease and I am on the liver transplant list the questions start rolling in.  Here are a few of the more common ones that people ask.

How did you get it?  

My Budd Chiari Syndrome was most likely caused by a hereditary blood disorder that I did not know I had. It causes my blood to clot easily.  It just so happened that the clots formed in my liver. There is a chance that I have had Budd Chiari since before I was pregnant with Anthony.  My father was tested and he too had the blood disorder (Prothrombin Gene Mutation G20210A). My siblings have a 50% chance of having it.  As do my boys.

Can't your liver just heal itself?

Yes the liver is the one organ that can regenerate itself.  When someone donates a part of their liver to another person, it will regenerate given time to heal itself.  For me, there is no break from the damage being done.  Scar tissue is building up and my liver is not able to reverse that damage.  

Are you scared? 

Hell yeah!  Plain and simple.  Being told that I could go from feeling great to a coma in a matter of hours has put a fog of fear over me. Honestly, not a day goes by that I don't think about it.  Every sharp pain or cold has me worried.  But I do my best to push aside the fear and I choose to live each day the best I can.  In the beginning, I was more afraid.  Add a high risk pregnancy and 5 doctors, yeah, I was a hot mess.  When he was born healthy, I was less afraid.  Now, I am able to deal with the fear so much better.  I know more and am more in tune with my body.  I'm not as afraid now, but its always gonna be there.

What is the cure?  

The only "cure" for Budd Chiari Syndrome is a liver transplant.  For me a living donor is not an option.  So I will have to wait for a cadaver donor.

How long until you can have a transplant?  

I have been on the Transplant list for over three years now.  And I have been pretty stable so unless something happens my guess is that its going to be a while.  My doctors have told me that as my liver weakens my other organs will be stressed.  And that eventually one of them will start to fail as well.  There is no way to tell if it will be my heart or kidneys, but that is their guess.  My MELD score has been in the 16- 19 range for the last year. With the highest score being a 40 and  the huge shortage of registered organ donors, who knows how long it will be.

Read More

Happiness is ______ {Week 22} #happinessis

Happiness is happy endings. Yesterday I received an email from the lady who adopted Bruce Wayne the Dane. She sent photos of him and her 18 month old daughter. They are best friends. I was told he sleeps in bed with her and follows her everywhere she goes. I'm not going to lie. I cried. Mostly because I was so happy to have had him in our lives even if it were just for a few short weeks. He is one special dog. And knowing that he is right where he belongs makes my heart so happy.

Happiness is winning. On Saturday Anthony's team won their first win. On the way home I received an email that I had gotten free tickets to scorpions game that night. And the Scorpions won their game is well. Even if our favorite player was injured and didn't get to finish the game. I also won another Giveaway I entered online.  Should have gotten a lotto ticket too.

Happiness is receiving a phone call from your friends speech teacher letting you know that he no longer needs to go to speech. Even though he won't be happy about not going to school I am glad he has caught up.

Happiness is a beautiful sunset at the end of yesterdays soccer practice.

Happiness is having a voice to text option when your hands hurt too bad to type. I love technology.  I know this post is up way late, but I finally had time to sit down and add in the pics.  90% of this post was done though my voice to text because my hands we trembling so bad today and are super weak.  At least they stopped shaking. Because man that was driving me nuts!

What has brought you happiness this week?   Please stop by Crazy Adventures in Parenting and see whats making others happy!  And share your happiness with #happinessis.  Here is to another happy filled week!

Read More

Updated MELD score

I have received others like it.  This letter.  It didn't matter though! When I saw it in between some other envelopes, my heart still stopped. Now that I look back, it is silly that I got so worried.  I tucked it into my purse and it took days before I could get the courage to open it.  I don't even know why I was so afraid.  It just looked scary.  And it was light.  Most letters I get from them are pages full of orders for my upcoming tests and appointments.  But one little page... I panicked.  Want to know what it was?  Orders for labs so that I could take it to the lab closer to home and would not have to go down to the Transplant Clinic.  Yup I was afraid of nothing!  Seriously.  What was I thinking?  Well actually I was worried they were going to tell me I was off the transplant list.  Or that there was something else wrong.  What can I say.  I'm a worrier.

So I got my labs done.  And the best part was, that I went ahead and had labs drawn for my other doctors as well.  No sense in getting poked again in a few days right!  After a few days of waiting, I got the call that I was waiting for.  No, not "the call"  But my nurses calling me back with results!  My MELD score is 19.

What does that mean for me?  Not much.  My levels are all pretty much the same.  They have all went up only slightly.  Now its more waiting.  I remember hating this part.  Feeling let down that my score wasn't going up. These days I am feeling even worse than I did back then but I have learned to be thankful for the health that I do have.  For me that means more time with my family and out of hospitals.  I am blessed to have made it this many years as healthy as I am. 5 years I have been fighting and I don't plan on stopping now.

We all know that sooner or later something has to give.  The pain is getting sharper and it lasts longer.  My fatigue is only getting worse.  And my mind is slowly slipping.  Yes, it makes me angry.  Yes, I have days where I just want to give up and get depressed.  Mostly I worry about how its going to affect my family. Eventually the day will come where I can't do the things I have managed to do this far.  I've had more bad days in the past few months that I had all year last year.  My feet swell while I am cooking dinner and I forget what I am doing.  My hands flap and cramp when I play cars with my son.  And I can't type with out taking many breaks.  Not just because of my hands but because my mind just wipes it self clean every few minutes and I have to re read what I am writing about.  I find myself  spending less and less time on the computer and my phone.  Crazy I know!  Even holding a book and trying to focus on what I am reading is exhausting.  I spend every minuet reminding myself where my boys are and what they are doing.  I constantly second guess myself and beat myself up over my mistakes.  But at the end of the day and more so with the start of every morning, I thank God for every day I am given here at home with my family!

Read More